Helping Patients Manage Their Chronic Conditions

June 2005 Helping Patients Manage Their Chronic Conditions

Prepared for: CALIFORNIA HEALTHCARE FOUNDATION

Authors: Thomas Bodenheimer, M.D. Kate MacGregor, M.P.H. Claire Sharifi

June 2005 About the Authors Thomas Bodenheimer, M.D., is an adjunct professor in the Department of Family and Community Medicine at the University of California, San Francisco. Kate MacGregor, M.P.H. is the research director of the Action Plan Project in the Department of Family and Community Medicine at the University of California, San Francisco. Claire Sharifi is a research assistant in the Action Plan Project.

About the Foundation The California HealthCare Foundation, based in Oakland, is an independent philanthropy committed to improving California’s health care delivery and financing systems. Formed in 1996, our goal is to ensure that all Californians have access to affordable, quality health care. For more information, visit us online (www.chcf.org). This report was produced under the direction of CHCF’s Chronic Disease Care Program, which seeks to improve the health of Californians by working to assure those with chronic diseases receive care based on the best scientific knowledge. Visit www.chcf.org/programs/ for more information about CHCF and its programs.

6 I. Introduction

8 II. Five Strategies for Clinical Practice Collaborative Decision Making: Establishing an Agenda Information Giving: Ask, Tell, Ask Information Giving: Closing the Loop Collaborative Decision Making: Assessing Readinesss to Change Collaborative Decision Making: Goal Setting

16 III. Impact on Behaviors and Clinical Outcomes

20 IV. Summary

22 Endnotes Executive Summary

SELF-MANAGEMENT SUPPORT IS THE ASSISTANCE caregivers give patients with chronic disease in order to encourage daily decisions that improve health-related behaviors and clinical outcomes. Self-management support can be viewed in two ways: as a portfolio of techniques and tools that help patients choose healthy behaviors; and a fundamental transfor- mation of the patient-caregiver relationship into a collaborative partnership. The purpose of self-management support is to aid and inspire patients to become informed about their conditions and take an active role in their treatment. True self-management support involves both patient education and collaborative decision making. This document describes five interlocking strategies that help caregivers work within the collaborative model. The five strategies are: I Collaborative decision making: establishing an agenda; I Information giving: ask, tell, ask; I Information giving: closing the loop; I Collaborative decision making: assessing readiness to change; and I Collaborative decision making: goal setting. In addition, this document reviews literature describing the effectiveness of self-management support interventions. Among the conclusions from that review: I Self-management support does improve health-related behaviors, and as a result, clinical outcomes. I The self-management support intervention for which the evidence is strongest is a collaborative interaction between caregiver and patient. I Providing information is a necessary—but not sufficient—intervention to improve health-related behaviors or clinical outcomes. I A collaborative relationship between caregiver and patient must be added to information giving in order to improve behaviors and outcomes.

4 | CALIFORNIA HEALTHCARE FOUNDATION Providing self-management support presents a major challenge to primary care practices because self-management support takes time— perhaps the most limited resource in primary care. Physicians cannot provide adequate self- management support amid the many competing agendas of a 15-minute office visit. Thus, primary care practices must create teams in which non-physician caregivers are trained to work with physicians in offering self-management support, from information giving and collaborative decision making to assessing patients’ readiness to change health-related behaviors and setting behavior-change goals.

Helping Patients Manage Their Chronic Conditions | 5 I. Introduction

At a neighborhood health fair, Felicidad Rojas was found to have an elevated cholesterol level. Her physician, whom she had seen for eight years, had never checked her cholesterol. She went to the library and used the Internet to learn about cholesterol, then changed her diet and began an exercise program. Within three months, her cholesterol level was normal. Don Rich, a corporate executive who had been receiving his health care from one of the nation’s leading multispe- cialty groups, was found to have elevated cholesterol during his routine yearly screening. He was offered a series of visits with the nutritionist, a free membership at a local gym, regular lab follow-up, and cholesterol-lowering medication. He did not follow the diet, did not go to the gym, and took the pills about once a week. His cholesterol remained high.

These examples illustrate the crucial role that patients play in the treatment of chronic disease. Felicidad Rojas experienced inadequate medical care but excelled at self-managing her cholesterol problem. Don Rich had the best medical care but was not interested in self-managing his cholesterol problem. How people self-manage their chronic health problems is often more important than the medical care they receive. Most people need assistance in learning to manage a chronic condition; an essential function of primary care is to help people become good self-managers.

Self-Management Support All patients with chronic conditions self-manage every day: They decide what to eat, whether to exercise, if and when they will take medications. The important question is whether they make changes that improve their health-related behaviors and clinical outcomes. To help such patients succeed, health care providers are explor- ing what is known as self-management support. This report examines the importance of self-management support, outlines some of the approaches caregivers are using, and considers the

6 | CALIFORNIA HEALTHCARE FOUNDATION evidence that self-management support can approach that provides information that patients improve health-related behaviors and clinical are interested in learning. outcomes. Several key characteristics illustrate the shift from Self-management support can be approached two a traditional to a collaborative interaction ways: as a series of techniques or tools that between caregiver and patient. encourage patients to choose healthy behaviors I In traditional interactions: or as a fundamental shift in the patient-caregiver • Information and skills are taught based on relationship. Rather than having caregivers, par- the caregiver’s agenda; ticularly physicians, tell patients what to do to • There is an assumption that knowledge improve their health, the new model is designed creates behavior change; to build a partnership between caregiver and • The goal is compliance with the caregiver’s patient, with a shared responsibility for making advice; and and carrying out health-related decisions. Caregivers provide patients expertise and tools; • Decisions are made by the caregiver. patients are responsible for their day-to-day I In collaborative interactions: health decisions. • Information and skills are taught based on The purpose of self-management support is to the patient’s agenda; help patients become informed about their con- • There is a belief that one’s confidence in ditions and take an active role in treatment. Self- the ability to change (called “self-efficacy” management support involves two interrelated by behavior researchers), together with activities: knowledge, creates behavior change; I Providing information about patients’ • The goal is increased confidence in the chronic conditions (helping patients to ability to change, rather than compliance become informed). with a caregiver’s advice; and • Decisions are made as a patient-caregiver I Working in partnership with patients to partnership. make medical decisions, including whether the patients agree to take medications rec- Is self-management support pertinent to all ommended by clinicians, whether patients patients, or are some patients by nature passive, wish to undergo diagnostic or surgical pro- poorly motivated, and unable to self-manage? cedures, and which health-behavior-related Some patients are by nature passive, but care- goals the patients choose to pursue (encour- givers should try to inform and motivate them. aging patients to become self-motivated). The purpose of the self-management support tools described in this report is to encourage Many people think that self-management sup- patients to become more motivated to adopt port is the same as patient education. However, healthy behaviors. If a patient chooses not to true self-management support involves both participate in health-related decisions, preferring patient education and collaborative decision that the clinician advise him or her what to do, making. Moreover, the education component the clinician has no choice but to make decisions of self-management support moves away from a on behalf of the patient but should check each didactic model of patient education toward an time to ensure that the patient agrees.

Helping Patients Manage Their Chronic Conditions | 7 II. Five Strategies for Clinical Practice

SELF-MANAGEMENT SUPPORT INVOLVES BOTH information giving and a collaborative partnership between caregiver and patient. Several strategies, techniques, and tools have been developed to assist patients within a collaborative model. Five interlocking strategies that help caregivers are described here. (Note: “Caregivers” refers to all those people who assist patients either formally or informally, including physicians, nurses, pharmacists, medical assistants, reception- ists, health educators, knowledgeable friends, and family members.) These are not the only strategies available; as caregivers experiment with practical ways to move from the traditional to the collaborative model, many more strategies are being tried. These particular strategies were chosen because they are relatively simple to learn, do not take an inordinate amount of face-to-face time with patients, can be modified for use in computer or Internet interactions, and have some basis in research evidence. (See Section IV: Impact on Behaviors and Clinical Outcomes.) The five strategies discussed here are: I Collaborative decision making: establishing an agenda; I Information giving: ask, tell, ask; I Information giving: closing the loop; I Collaborative decision making: assessing readiness to change; and I Collaborative decision making: goal setting.

Collaborative Decision Making: Establishing an Agenda Under the traditional model, the patient states a chief com- plaint, and shortly thereafter the physician assumes control of the agenda. For instance, in one study of 264 visits to board-certified family physicians, patients who made initial statements of their problems were interrupted by the physician after an average of 23 seconds.1 Under the collaborative model, an agenda for the visit is nego- tiated between the patient and caregiver, but the patient has the last word. If the caregiver wishes to discuss an issue with the patient, the patient’s permission for that discussion should be sought. Such a conversation might unfold as follows:

8 | CALIFORNIA HEALTHCARE FOUNDATION Information Giving: Ask, Tell, Ask Agenda-Setting Dialogue In the traditional model, physicians, health Caregiver: Your hemoglobin A1c has gone up educators, and other caregivers provide patients from 7.5 to 8.5. information. Often, not enough information is Patient: That’s not good. It’s supposed to be given. In a 1994 study, 76 percent of patients under 7, right? with non-insulin-dependent Type 2 diabetes 2 Caregiver: Would you like to spend a few received limited or no diabetes education. minutes discussing what we might do? Numerous studies show that as many as half of all patients leave an office visit not understand- Patient: OK. ing what the physician said.3 Minority patients Caregiver: Let me ask you this, do you have receive even less information about tests, proce- any idea how you might bring your dures, treatments, and prognosis than white HbA1c back down? patients.4 Patient: Well, probably the way I eat, doing Other times, patients receive too much informa- exercise-—and taking my pills—has a lot tion. For example, the American Diabetes to do with it. Association (ADA) Web site lists 26 domains of Caregiver: That’s right. We have a tool called knowledge and skill building that patients with a bubble chart that has some choices for diabetes should master. Walking through this improving your HbA1c. Is there anything curriculum step-by-step may impart more on this chart you might like to focus on? confusion than useful knowledge to adult learn- Patient: I think I’d like to talk about exercise. ers. Adult learning appears to take place chiefly through “self-directed learning,” in which the Figure 1. Bubble Chart material to be learned is chosen in a self-motivated manner by the learner and does not nec- essarily follow a step-by-step or linear format.5 One technique that fits within the framework of HEALTHY EXERCISE self-directed learning is called “elicit, respond, EATING elicit,” or “ask, tell, ask.”6 The technique attempts to provide information to patients (thus addressing the lack-of-information problem) in a man- PATIENT- ner directed by the patient (thus addressing the MEDICATION DEFINED OPTION excess-of-information problem). A caregiver can ask a patient newly diagnosed with diabetes, “What do you know about diabetes?” or “What Example of a typical bubble chart used would you like to know about diabetes?” After as a visual tool to help chronic disease patients understand the options for man- receiving an answer, the caregiver then tells the aging their condition. Patients may either patient the information and again asks whether select from among the choices displayed the patient understood and what additional or suggest their own alternatives. information is desired. Over time, many of the ADA’s 26 domains may be covered using a patient-directed agenda.

Helping Patients Manage Their Chronic Conditions | 9 ication), did physicians ask patients with diabetes Ask-Tell-Ask Dialogue to restate the physician’s instructions to show that Caregiver: I just checked your blood sugar, they understood what the physician had said. and I have to tell you something very This technique of assessing a patient’s under- important. You have diabetes. standing is called “closing the loop.” When Patient: Diabetes? Oh, my god. patients were asked to restate information given, they responded incorrectly 47 percent of the Caregiver: Do you know what diabetes is? time. In the study, patients given the opportunity Patient: I know someone who had it. Her to close the loop had average HbA1c levels lower blood sugar went way up, and she went than patients who were not. Thus, closing the into a coma and died. loop, a simple technique of assessing patients’ Caregiver: A coma is actually very rare in your understanding, has the potential to improve kind of diabetes. patient comprehension and diabetes outcomes.7 Patient: Another person I know had to get his The last three lines of the preceding ask-tell-ask toe cut off. He also had major trouble dialogue provide an example of closing the loop. with his eyes. Caregiver: Those things can happen in dia- Closing-the-Loop Dialogue betes, but they can also be prevented. Tell Caregiver: Three things help to prevent com- me this: What would you like to know plications: improving your diet, exercising about diabetes? more, and taking medicines. Can you Patient: I need to know how to keep my feet repeat that back to me so I know it’s clear? attached to my body, how not to get real- Patient: Eat less, walk more, and take pills. ly sick like the other people I’ve known. Caregiver: Good. Caregiver: Do you have any idea what to do to prevent bad complications like ampu- tations? Collaborative Decision Making: Assessing Readiness to Change Patient: I’d say you lose weight, and there is probably some pill that can help. In the traditional model, the physician tells or advises the patient to make lifestyle changes: Caregiver: Three things help prevent compli- “You need to stop smoking.” “If you want to get cations: improving your diet, exercising your diabetes under control, it is necessary to more, and taking medicines. Can you exercise 30 minutes a day.” “I’m prescribing you repeat that back to me so I know it’s clear? a new pill for your cholesterol.” Patient: Eat less, walk more, and take pills. In the collaborative model, improving health- Caregiver: Good. Where do you want to start? related behaviors is a decision the patient needs to make. In the words of self-management Information Giving: scholar Kate Lorig, “If people don’t want to do Closing the Loop something, they won’t do it.” Before trying to A technique related to the ask-tell-ask process has negotiate a behavior change with a patient, the gained importance. According to one study, only caregiver needs to assess a patient’s readiness to in 12 percent of discussions of new information make a change and to tailor further discussion (a lifestyle change recommendation or new med- to that degree of readiness.

10 | CALIFORNIA HEALTHCARE FOUNDATION There are two related but distinct ways to think there anything you would like to do this week to about a patient’s readiness to change. One, the improve your health?” This question allows the transtheoretical model (TTM), is based on the patient to set the agenda, thereby circumventing “stages of change” model. Using smoking cessa- the issue of which “stage of change” the patient tion as an example, this model classifies individu- inhabits. Even if the patient sets the change agen- als into one of the following groups based on da, there are still differences in readiness that are their readiness to change: pre-contemplation (not important to address. MI suggests some useful intending to make a behavior change during the techniques to assess readiness to change (impor- following six months), contemplation (thinking tance and confidence) and to encourage patients about behavior change), preparation (intending to increase their readiness.12 to take action within a month), action (making Motivational interviewing is a behavioral coun- a specific change), and maintenance (prevention seling approach that originally surfaced in of relapse, with the behavior change persisting for alcohol-addiction treatment. MI fits within the six months to five years).8 These concepts were collaborative model and stresses the importance initially formulated for problems of addiction of internal motivation. It might be particularly but are increasingly being applied to chronic useful to clinicians caring for patients who have disease-related lifestyles (diet, exercise, taking multiple health issues. A barrier to addressing medications).8-11 multiple health issues is the time it takes to The other readiness-to-change model—offered learn and carry out interventions for each par- by theorists of motivational interviewing (MI)— ticular issue. A generic intervention such as MI, does not employ the specific stages proposed by which can be applied to many different health the transtheoretical model. In the MI model, behaviors, can overcome this barrier. readiness = importance x confidence. For example, The spirit of motivational interviewing can be people who do not think physical activity is found in the concepts of collaboration, evoca- important are unlikely to begin such activity. tion, and autonomy.6 By active collaboration, the People who view physical activity as important patient and counselor develop a non-judgmental, but lack confidence in their ability to succeed are non-authoritarian relationship that more closely similarly unlikely to initiate the change. Unlike resembles a partnership than a traditional clini- the pre-contemplation stage, which lumps all cian-patient interaction. In a true collaboration, non-ready people together, the MI model per- the clinician refrains from giving advice to a ceives that the interventions needed to encourage patient and instead evokes the experiences, change when low importance is the barrier are beliefs, and ideas that motivate the patient. This very different than those needed when low confi- process allows the clinician to obtain a truer pic- dence is the issue. ture of the patient’s reasons to change or not to The TTM approach might be applicable when change and allows the patient to examine and only one behavior is on the agenda, for example, reflect upon his or her feelings about behavior tobacco or alcohol addiction. It is not applicable change. MI’s recognition of the patient’s autono- when patients are asked whether they are inter- my is demonstrated throughout the entire ested in changing any unhealthy behavior or process but particularly when the argument for when patients set the agenda on which behavior change is brought up. MI assumes that most peo- they wish to discuss. TTM is helpful when ask- ple are ambivalent about whether to change their ing a patient, “Do you want to quit smoking?” behavior and tries to bring the ambivalence out It is not helpful when asking the question used into the open. Ideally, it is the patient, not the by Kate Lorig in self-management classes: “Is clinician, who presents the argument for change.

Helping Patients Manage Their Chronic Conditions | 11 How does motivational interviewing work in practice? The MI counselor—who could be a Caregiver: Now, using the same 0-to-10 scale, physician, nurse, psychologist, health educator, or how confident are you that you can get other caregiver—first assesses a patient’s readiness more exercise? A “0” means you aren’t to change health-related behaviors, then uses sure at all; “10” means you’re 100 percent interviewing techniques to help the patient sure. increase his or her willingness to change, and 0 1 2 3 4 5 6 7 8 9 10 finally—if the patient is motivated to make an Not Sure Very Sure action plan—engages in concrete goal setting. (See the following section on Collaborative Decision Making: Goal Setting.) Primary MI Patient: It’s a “4.” Like I said: I have no time. techniques are: assessing the readiness to change Caregiver: Why did you say “4” and not “1”? by estimating the patient’s level of importance Patient: I can exercise on the weekends, so and confidence; and encouraging “change talk” it’s not something that completely (i.e., patients making arguments about why impossible. behavior change would be a good idea) by the patient. The following dialogue demonstrates Caregiver: What would it take to raise the these techniques: confidence level of a “4” to an “8”? Patient: Maybe if I could exercise with a Readiness-to-Change Dialogue friend, I’d enjoy it more, be more moti- Caregiver: I just got back your last HbA1c; vated. I have a friend at work that has it’s gone up to 8.5. diabetes, too. Patient: It’s supposed to be 7 or lower. Caregiver: Do you want to set a short-term goal about your exercise? We could agree Caregiver: That’s right. What would you like to do about this? on an action plan. Patient: I’m already on a diet, and I’m so busy, I have no time for exercise. I don’t know Lessons from the Dialogue what to do. The caregiver allows the patient to approve the Caregiver: Could we talk a bit about the agenda: “Could we talk a bit about the exercise?” exercise? If the level of importance is high—7 or above— Patient: Umm, yeah, OK. the caregiver moves on to confidence level. If the Caregiver: How important is it to you to level of importance is low, it might help to pro- increase your exercise? Let’s do this on a vide more information about the risks of not scale of “0” to “10.” A “0” means it isn’t changing the behavior. If the caregiver decides to important, and “10” means it’s just about propose an action plan, it would be something as important as it can get. like: “Would you like to read this pamphlet about diabetes and talk about it next time I 0 1 2 3 4 5 6 7 8 9 10 see you?” Not Important Important If the level of confidence is medium-low (e.g., 4), the caregiver asks why it is 4 and not 1. That Patient: It’s an “8.” I know I really need to puts the patient in a position to speak positively do it. about why there is some level of confidence.

12 | CALIFORNIA HEALTHCARE FOUNDATION Asking what it would take to change the 4 to an agreeing on an action plan is a collaborative 8 makes the patient think creatively about how one, and it uses some motivational interviewing to make a behavior change. In this case, it leads techniques. to an action plan. The action plan might be to The theoretical basis for goal setting is the con- talk to the friend at work tomorrow and ask cept of self-efficacy.15 Self-efficacy is a person’s about exercising together, an achievable goal that level of confidence that he or she can carry out a could lead to further activity planning (e.g., to behavior necessary to reach a desired goal. This walk with the friend for 20 minutes at lunch on confidence level can be measured using a simple Mondays, Wednesdays, and Fridays). questionnaire. In a randomized, controlled trial If there is a sufficient level of importance and of a patient self-management course for people confidence to make a behavior change, the care- with a variety of chronic conditions, researchers giver suggests discussing an action plan. Some found that patients attending the course had sev- practitioners of MI believe that action plans are eral improved outcomes compared with controls appropriate only if the readiness to change and that a significant association existed between (importance and confidence) is high; others improved self-efficacy and improved outcomes.16 believe that action plans can be discussed at any Self-efficacy in patients with diabetes is correlated level of importance and confidence but must be with choosing healthy behaviors.17 In a study of tailored to where the patient is on the 0-to-10 exercise, self-efficacy significantly predicted scales. participation in exercise programs.18 Other investigators confirm that self-efficacy is associ- If patients or caregivers have difficulty working ated with healthier behaviors.19 -21 with 0-to-10 scales, other ways of demonstrating importance and confidence can be used, such as In the process of making an action plan, meet- thumbs-up or thumbs-down pictographic scales.13 ing established guidelines (e.g., exercising for 30 minutes at least five times a week) is not so important. What is important is success: that Collaborative Decision Making: the patient is able to carry out the action plan, Goal Setting thereby increasing his or her self-efficacy. In the The latter part of the preceding MI dialogue traditional model, physicians tell patients what demonstrates how motivational interviewing can behavior change to make. Often, the advice is be used in conjunction with goal setting to help not concrete and not easily achievable: for patients set targets they feel they can achieve. example, “You need to lose 20 pounds.” Advice Goal setting in self-management support is an that is not concrete or easily achievable often interaction between caregiver and patient result- sets the patient up for failure, thereby reducing ing in the patient agreeing to a concrete, usually self-efficacy and breeding further failure to short-term, goal. Goal setting is accomplished by adopt healthy behaviors. Early in the process, caregivers and patients by formalizing an action it is important to explain the need to set clear plan. Goal setting is the process, and action plans and achievable goals. are the result of the process. The actions are high- ly specific—such as walking around the block twice on Mondays, Wednesdays, and Saturdays before lunch, or reducing consumption of cook- ies from three to one per day.14 The process of

Helping Patients Manage Their Chronic Conditions | 13 Goal-Setting Dialogue Patient: I can do it; I’m 100 percent sure. Caregiver: Your last lab test shows your Caregiver: Let’s try to make this as specific as HbA1c has gone up to 9.2. What do you possible. Rather than walking every time think about that? you feel stress, how about walking two Patient: I don’t know. I’m taking my pills. I times around the block every day after thought if I took them I didn’t have to lunch? worry about eating candy and sweets Patient: Well, if I feel stress, that might be every day; the pills are supposed to pro- OK. tect me. Caregiver: Why don’t we call it your action Caregiver: What is it you like about eating plan: You will walk around the block two candy? times when you feel the stress coming on. Patient: I love chocolate; it’s kind of comfort- When do you want to start? ing. I have all these things that stress me Patient: We’ll see. out, but I know that chocolate is one Caregiver: Do you want to start this week? thing in my day I will definitely enjoy. Patient: That might work. Caregiver: That makes sense. Is there anything you don’t like about eating chocolate? Caregiver: OK. Why don’t we agree that you will walk around the block two times Patient: Well, it messes up that hemoglobin when you feel stress? Could I call you thing. But I don’t want to give it up. Like next week to see how it’s going? I said: It makes me happy. Patient: OK. Caregiver: Is there anything else you enjoy doing that helps reduce your stress but doesn’t get your HbA1c so high? Lessons from the Dialogue When the patient mentions an unhealthy behav- Patient: Maybe I could walk around the block ior (eating chocolate twice a day, for example), a couple of times. the caregiver doesn’t challenge it but uses an MI Caregiver: Do you want to give that a try? technique: What do you like, and what do you Patient: Sure, but I’m not promising to give not like about the unhealthy behavior? This up chocolate. encourages the patient, not the caregiver, to talk Caregiver: I understand. Let’s do a reality about change (what he or she doesn’t like). This check. How sure are you that you can might uncover a topic for an action plan—in this walk around the block a couple of times case, relieving stress. when you feel stress? Let’s use a 0-to-10 The caregiver does not judge the patient’s scale: “0” means you aren’t sure you can behaviors. When the patient says: “I’m not succeed, and “10” means you are very sure promising to give up chocolate,” the caregiver you can succeed. How sure are you about doesn’t make a judgment but says, “I under- this? stand,” and moves on.

14 | CALIFORNIA HEALTHCARE FOUNDATION The action plan should be very simple and specific. The 0-to-10 scale estimates the patient’s confidence that he or she can succeed at the action plan. The purpose of the action plan is to increase self-efficacy (self-confidence that the patient can change something). It doesn’t matter how small the behavior change is; the important thing is that the patient succeeds. To maximize the chance of success, the patient should have a high level of confidence, at least 7 out of 10, that he or she can succeed. If the level of confidence is low, the caregiver should suggest a more achievable action plan. If, for example, a seden- tary patient proposes an action plan to walk five miles a day, with a level of confidence of 3 that he or she can succeed, the caregiver should suggest a more achievable action plan. At the end of the dialogue, the caregiver tries to make the action plan more specific (“When do you want to start?”), but the patient resists (“We’ll see” and “That might work”). Rather than challenging the patient, the caregiver goes with what the patient is willing to do. Sometimes, the patient will not want to make an action plan at all.

Helping Patients Manage Their Chronic Conditions | 15 III. Impact on Behaviors and Clinical Outcomes

THE LITERATURE ON SELF-MANAGEMENT SUPPORT is plagued by unclear descriptions of the interventions being studied and a high degree of variability in the content and outcome measurements for these interventions. Given these limitations, however, the authors did consult several recent literature reviews, one meta-analysis on self-management interventions, and one lengthy review of self-management conducted by Kaiser Permanente to draw a few conclusions about the ability of self-management support to improve health-related behaviors and clinical outcomes.14,22-26 This report categorizes interventions as: information giving only; collaborative decision making; goal setting; and motivational interviewing. Before reviewing the evidence, two issues deserve brief atten- tion. First, self-management-support interventions vary in their types and effect on outcomes, depending on the chronic condition or behavior that is the target for change. Second, outcomes measured generally include: health-related behaviors, usually self-reported; clinical outcomes (e.g., HbA1c levels, BMI, frequency of asthma symptoms, or arthritis-related pain; and self-efficacy (a person’s level of confidence that he or she can achieve a certain behavior-change goal, usually measured by using questionnaires). These three categories of outcomes are associated with one another. For diabetes, for example, improved diet and exercise are associated with increased self-efficacy and improved HbA1c levels.20,22,24 For patients with persistent asthma, regular use of controller medications is associated with fewer asthma-related symptoms and lower asthma-related deaths.22

Information Giving Only Didactic patient education by itself does not improve health- related behaviors or clinical outcomes. Several reviews have shown the effectiveness of education for improving knowledge in diabetes care.24,27-29 However, knowledge transfer alone is inadequate to influence human behavior; for example, diabetes education by itself seldom leads to improved glycemic control.24,30-32 A Kaiser Permanente review of information-only interventions in asthma concluded that “self-management interventions emphasizing improvements in knowledge or the provision of

16 | CALIFORNIA HEALTHCARE FOUNDATION information alone were not effective in achieving An abundance of evidence suggests that the col- positive health outcomes or other benefits.”26 A laboration model improves patient outcomes. In 2002 meta-analysis of 12 randomized controlled a classic experiment, patients were provided a 20- trials on information-only programs for adults minute intervention designed to increase their with asthma found no improvements in hospital- participation in decision making and information ization rates, number of physician visits, frequen- seeking with the provider.37 The control groups cy of asthma attacks, or medication usage.33 received purely didactic information. In contrast with control patients, study patients showed sig- A literature search of arthritis self-management nificant decreases in HbA1c values from baseline, intervention studies published between 1993 even though there were no differences in diabetes and 2001 identified 18 studies that were divided knowledge between the two groups. into two groups. Group 1 contained true self- management education interventions involving In a comprehensive review, other researchers both information giving and active patient concluded that a participatory relationship involvement, and Group 2 studies provided between physician and patient is one of the most information-only patient education or a weak successful factors promoting healthy behaviors.38 program to motivate patients. All 10 of the Another study found that patient participation studies in Group 1, compared with only two of in decision making increases the concordance of eight studies in Group 2, improved clinical out- physician and patient goals, the understanding comes in the intervention group.14 of physician recommendations, and self-efficacy.20 Self-management improves when the opinions and values of both patients and physicians Collaborative Decision Making are taken into account in making treatment The preceding studies show that knowledge decisions.39 Other investigators have found that transfer alone is seldom enough to improve collaborative care improves the chances that health-related behaviors and clinical outcomes.34 the patient is in agreement with the decisions The additional factor needed to improve patient made and thereby improves health-related self-management—in both the clinician behaviors.24, 40-42 encounter and the patient education intervention—is collaboration between caregiver and Another study connected all the dots, finding patient. significant associations between improved information giving by the physician, more participa- Collaborative decision making is an alternative to tory decision making, enhanced self-efficacy, the paternalistic model in which physicians make healthier behaviors, and better outcomes in all treatment decisions and tell patients what to patients with diabetes.43 The researchers con- do. Shared decision making is a process by which cluded: “Enhancing patient-provider communi- clinician and patient “consider available informa- cation and shared decision making have been tion about the medical problem in question, shown to result in greater patient satisfaction, including treatment options and consequences, adherence to treatment plans, and improved and then consider how these fit with the patient’s health outcomes... The consistency of these stud- preferences for health states and outcomes.”35 ies’ findings of improved physiologic outcomes Currently, medical practice rarely employs collab- and reported health status is impressive.” orative decision making; in a study of 1,000 physician visits, the patient did not participate in decisions 91 percent of the time.36 Helping Patients Manage Their Chronic Conditions | 17 Goal Setting pants who did not target behaviors. The chal- Goal setting is a feature of the Arthritis Self- lenge for most primary care goal-setting interven- Management Program (ASMP), a series of classes tions will be finding ways to integrate them into in which patients meet to learn problem-solving the hectic 15-minute visit while maintaining a skills and develop goal-setting action plans. Four collaborative approach to decision making. years after the six-week-long classes, patients Innovative computerized health-risk assessment, reported a mean reduction in pain symptoms of interactive technologies, and a team approach to 20 percent; a comparison group did not demon- self-management support might provide partial 60-62 strate this reduction. This reduction was associat- remedies. ed with improvement in self-efficacy, patients’ Several studies have examined goal setting unre- confidence in being able to cope with their lated to specific chronic diseases.63-67 One study arthritis.44, 45 Similar classes (the Chronic Disease followed 95 young participants who chose Self-Management Program) using goal setting for lifestyle-change goals for exercise (53 percent), patients with multiple chronic conditions result- stress management (22 percent), and eating ed in improved self-efficacy and decreased health behavior (16 percent) and found that goal-setting distress.16, 46 skills improved with experience.63 Another study In a meta-analysis and meta-regression of 28 compared client-participation in goal setting with diabetes self-management studies, goal setting provider-selected goals and found a significant in one form or another was a component in 21 difference between the groups for weight reduc- separate interventions.47-54 However, few of these tion and exercise levels, with the collaborative 64 studies include details of the goal-setting compo- goal-setting group being more effective. nent or evaluations of whether the patients Researchers who identified six dietary interven- engaged in or completed their goals. tion studies of intermediate and short-term goal setting found all six to have positive results.65 In Goal setting in asthma self-management is differ- the Stanford Nutrition Action Program, interven- ent from that applied to diabetes or arthritis, tion participants who set six weekly goals rated generally focusing on symptom awareness and the goal-setting activity as very helpful and use of medications rather than lifestyle change. reported greater reductions in dietary fat intake Asthma action plans are written instructions to and greater self-efficacy compared with partici- patients and families on what to do if symptoms pants receiving a general nutrition curriculum.66 worsen. Studies of self-management interventions for asthmatic adults have found improved out- In an extensive review of behavioral interventions comes in patients who adjusted their medications to modify dietary intake, researchers found that using a written plan as opposed to those whose most of the 104 randomized controlled trials medications were adjusted by a physician.55, 56 were successful at increasing fruit and vegetable intake and decreasing fat intake and concluded Small studies of goal setting as a component of that two intervention components seemed to brief primary care interventions for behavior be particularly promising in modifying dietary change are promising.57-61 Researchers found behavior—goal setting and small groups. Goal moderate improvements in dietary behavior but setting was associated with a greater likelihood small changes in clinical outcomes and quality of of observing a significant effect for all three life for participants of a brief, computer-assisted outcomes (reduction in total fat, reduction dietary goal-setting intervention.57 Adolescents58 in saturated fat, increased intake in fruits and and adults59 who “targeted” a nutrition or physi- vegetables).67 cal activity goal improved their dietary behavior and moderate physical activity more than partici-

18 | CALIFORNIA HEALTHCARE FOUNDATION Motivational Interviewing and researchers found that an MI intervention for Readiness to Change adolescents had positive, significant effects on Strategies tailored to patients’ readiness to change reducing the proportion of calories from fat and 72-73 fit nicely with goal setting as an increasingly dietary cholesterol. The adolescents reported popular self-management support intervention. high satisfaction with the intervention. Other Is there any evidence, however, to recommend studies have addressed MI as an intervention for either the transtheoretical model (TTM) or prevention or management of chronic disease motivational interviewing (MI) for improving and have also come up with results that, while 74-78 health-related behaviors or clinical outcomes? mixed, are generally positive. A handful of MI-based studies have targeted smoking cessa- TTM might be more appropriate for addictive tion, with small positive results.79, 80 A 2002 behaviors than for other self-management issues. review concluded that more studies are needed A 2002 review of 87 studies based on TTM to determine the effectiveness of this approach found no empirical evidence to suggest that the for smoking cessation.6 stages of change are discrete.68 Patients might be involved in more than one stage at the same Motivational interviewing has been found to 81-83 time, causing the concept to lose much of its work equally well for women and men and usefulness. Two investigators say that current appears to be more effective with individuals who 79, 84-85 evidence cannot confirm that behavior change have a low readiness to change. It also occurs in distinct stages.9 Other researchers, appears to increase readiness to change as much 6, 86-90 investigating TTM and dietary behaviors and as, or more than, alternative interventions. exercise, found that classifying people in time- Reviews of MI studies have found results to be dependent stages was problematic and not as mixed. One possible reason is a lack of “interven- useful with complex behavioral issues such as tion fidelity”; few studies provide “evidence of diet and exercise as with smoking or alcohol counselor competence or fidelity to MI principles addiction.9-11 and practices.” Poor study outcomes might also A systematic review of motivational interviewing be attributable to limitations such as inadequate found this technique to be generally effective for follow-up, small sample size, and low rates of 73 people with drug and alcohol addition.69 An MI treatment completion. intervention for patients with hyperlipidemia found significant improvements in dietary habits, fat intake, and BMI, although there were no differences between the MI group and the standard dietary advice control group and no reduction in serum cholesterol.70 A 1999 study aimed at increasing exercise that used a no-treatment control group, a one-session MI group, and a six-session MI group found that the six-session group showed significant reductions in weight and blood pressure compared to the control group, and the one-session group had significantly decreased alcohol intake and salt intake.71 The other two study measures—smoking and physical activity—were not significantly changed in any of the groups. A 1999 study reviewed by

Helping Patients Manage Their Chronic Conditions | 19 IV. Summary

A NUMBER OF GENERAL STATEMENTS CAN BE made about the effectiveness of self-management support interventions. I Self-management support does improve health-related behaviors and, as a result, clinical outcomes. I The self-management support intervention for which the evidence is strongest is a collaborative interaction between caregiver and patient. I Providing information is a necessary—but not sufficient—intervention to improve health-related behaviors or clinical outcomes. I A collaborative relationship between caregiver and patient must be added to information giving to improve behaviors and outcomes. I Informed, motivated patients tend to have better health- related behaviors and clinical outcomes. I Collaborative decision making has been found in several studies to improve health-related behaviors (diet, exercise, taking medications) and clinical outcomes (particularly for diabetes). I Some evidence suggests that goal setting using action plans can result in better diet, exercise, and weight loss. I Most of the goal-setting literature has not measured whether goals were achieved nor whether there was a relationship with self-efficacy. I Counseling patients using the transtheoretical model’s “stages of change” appears to be helpful for smoking and alcohol addiction but has not been proven effective for behavior change related to self-management of chronic disease. I Motivational interviewing appears to be effective in helping people addicted to tobacco and alcohol; evaluations of its effectiveness in improving health-related behaviors such as diet and physical activity are mixed, though several studies show a positive effect. I Goal setting and motivational interviewing are specific approaches for engaging in collaborative interactions.

20 | CALIFORNIA HEALTHCARE FOUNDATION Although these two methods have not been Recently, experimentation has begun in the use rigorously demonstrated to be evidence- of electronic methods to help with self-manage- based, they provide a sensible guide that ment support. Some of these include interactive helps caregivers to engage in a collaborative phone messaging systems, telemedicine hookups, process with patients. touch-screen computers, personal digital assistants (PDAs), and Web-based goal-setting soft- ware. These new methods are described in two The Challenge for Primary Care related CHCF reports, Patient Self-Management Providing self-management support presents a Tools: An Overview and Using Telephone Support major challenge to primary care practices because to Manage Chronic Disease. self-management support takes time, a limited resource in primary care. Physicians cannot provide adequate self-management support amid the competing agendas of a typical 15-minute office visit. Therefore, primary care practices must create care teams in which some non-physician caregivers are trained to work with physicians in offering self-management support—information giving and collaborative decision making— including assessment of readiness to change health-related behaviors and behavior-change goal-setting. Exactly which personnel perform which self-management support functions will vary widely, depending on which caregivers have available time. Training in self-management support techniques and tools for all personnel is essential if primary care practices are serious about helping their patients to become informed and motivated. In different primary care practices around the United States, self-management support functions have been carried out by physicians, nurse practitioners, physician assistants, nurses, health educators, pharmacists, nutritionists, medical assistants, community health workers, coaches, and other trained patients. Information giving, assessment of readiness to change, and goal setting can occur in private or group settings.

Helping Patients Manage Their Chronic Conditions | 21 Endnotes

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